Is this restless legs?

[Contra21]

This started 2 weeks ago. Burning pain in my thighs aching, pulling pain. All day. Can't sleep. I've had llow iron my whole life but never like this. It's unbearable. Is this what restless lega feel like? It's unbearable . Only thing that helps is muscle cream the ones that burn to try and sleep. Ps help. Recently diagnosed with ms also.

[SueJohnson]

Nope. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[Contra21 in reply to SueJohnson]

Mine do worsening at night. Wakes me. Aching is so bad. Why wouldn't I have it

[SueJohnson in reply to Contra21]

You have to meet all of the criteria.

[Contra21 in reply to SueJohnson]

What am i missing? Any tips on getting out to go away

[SueJohnson in reply to Contra21]

Do you have an urge to move your legs? Not just to stop the pain.

Do your symptoms get better when walking or stretching as long as it is continued?

Are your symptoms usually dormant in the morning?

Do your symptoms go away when you stand up?

ALL of these must be true.

[Weezie99 in reply to SueJohnson]

Well, my RLS started in the early evenings, for a few hours. Then progressed to all night. Then to 24/7. And sometimes to my elbow area. I don't think we can say that everyone has to have ALL the symptoms for it to be RLS.

[SueJohnson in reply to Weezie99]

It is the standard accepted definition. Yours meets the criteria.

[Contra21 in reply to SueJohnson]

If it's stopped can it still be rls or is it a condition that doesn't stop?

[SueJohnson in reply to Contra21]

Without medication, increasing ferritin or removing triggers including inflammation RLS doesn't go away. It can only be controlled.

[Contra21 in reply to SueJohnson]

So it's constant. You never get a few days of no pain? Can the aching b3 in the legs be during the day too??

[SueJohnson in reply to Contra21]

Only low levels of Vitamin B1 and D can cause painful legs. Have you had your levels checked?

[Contra21 in reply to SueJohnson]

My vitamin d is nearly 100 but b1 haven't checked

[ChrisColumbus]

No. But I note that you have thyroid issues and there can be a link between hypothyroidism and peripheral neuropathy, a symptoms of which can include a burning sensation

mayoclinic.org/diseases-con...

Just one possibility.

[Contra21 in reply to ChrisColumbus]

I'm treating my thyrpid though

[ChrisColumbus in reply to Contra21]

Yes, but as you don't meet the standard criteria for RLS it is likely to be something else. It could still be neuropathy, paraesthesia etc whether linked to thyroid or not. Has anything - in terms of medications, diet etc -changed in the last couple of weeks that has caused this, as well as the leg pains you've queried on Thyroid UK?

[Eryl in reply to Contra21]

You say that you're treating your thyroid issues but is it the right treatment? youtu.be/vjFrW695SV8?si=DS_...(Not working as expected?)

[Contra21 in reply to Eryl]

I have no thyroid so my options are take thyroxine

[Calise in reply to ChrisColumbus]

Get your B12 levels checked. Pernicious anaemia and hypothyroid often go together. Pernicious anaemia has symptoms similar to what you're experiencing, and low iron can also be an issue. This is similar to my experience too. Now all gone with regular iron, folic acid and B12 injections. There is an excellent support group here.

[Calise in reply to Calise]

I also note the MS diagnosis, so this is probably the cause. Still worth checking iron and b12 levels and sorting them out too.

[Contra21 in reply to Calise]

My ferreting Is 16 and b12 220. But never had this even with levels that low.

[Calise in reply to Contra21]

Your b12 and iron levels are very low but technically in range. However the ranges used are too high in many people's opinions. My b12 levels were 199 when I was diagnosed and I'd had nerve pain for 20 years. Definitely worth looking on the pernicious anaemia support group here and asking advice there. There are many people on there more knowledgeable than me.

[Contra21 in reply to Calise]

I don't have pa. But I will get a round of b12 shots to top up

[LotteM]

Do you have the urge to move?

[Contra21 in reply to LotteM]

Yes and no but I can lie there with the ache and I just want to cry and scream. I cannot sleep from the aching pain.

[LotteM in reply to Contra21]

If it is RLS, then you HAVE to move eventually.

I am sorry, but it doesn’t sound like RLS. Make sure you rule out other neurological conditions.

[Contra21 in reply to LotteM]

I have ms

[LotteM in reply to Contra21]

Sorry to hear that.

[Joolsg]

No. That burning pain is VERY common in MS. I have MS and RLS. They are very distinct.The burning pain is neuropathy/nerve pain and is usually treated with Amitriptyline. However, Amitriptyline makes RLS far worse.

With RLS you cannot lie down. You have the unbearable URGE to move. And walking, moving relieves the crawling, pulling sensations. With MS nerve pain it feels as though someone has set your nerve endings on fire. And yes, it reduces you to tears.

Your neurologist will probably prescribe Amitriptyline and I'll bet it works.

If not, medical cannabis will really help the burning pain.

And make sure you get on a very high efficacy MS drug as soon as possible. Tysabri or Alemtuzumab or Mavenclad.

[Contra21 in reply to Joolsg]

I'm yet to start trearment. I was offered trcfedera

[Joolsg in reply to Contra21]

Different countries and different neurologists have different preferences.Follow Dr Aaron Boster on YouTube.

But do start a good drug asap. Time is brain. When I was diagnosed 31 years ago there were zero treatments and we knew our future wasn't good. Most people diagnosed back then knew they would be in a wheelchair within 10 years. That is not the case now because the research has produced really great, effective drugs.

Attacks cause permanent, irreversible damage. The good drugs stop the attacks. And prevent damage.

So, look at Dr Boster's webcasts and discuss a good treatment asap. Your neurologist will offer the best and most suitable.

And the nerve pain will settle, but ask for medical cannabis or Amitriptyline in the meantime.

[Contra21 in reply to Joolsg]

How do I know this is the ms. Oh boy this diagnosis has changed my.life. I'm terrified. how many lesions do you have I'm so scared ones in my spine now. I've seen his videos but hard to wrap my head around it all. How often are your mris did you get side effects from the medicine, have a special diet? I was diagnosed in march. Yet to stay as in scared.

[Joolsg in reply to Contra21]

I have too many lesions to count. When diagnosed, my neurologist said my brain looked like 'Blackpool illuminations'. I have many spinal lesions as well. Spinal damage causes walking difficulties and bladder and bowel disfunction.The sooner you start treatment, the sooner you stop more attacks and more lesions.

Burning nerve pain is extremely common in MS. As it came on suddenly for you, 2 weeks ago, MS is the MOST likely cause.

In the UK, we have at least one MRI a year. More if you are on Tysabri.

Side effects are different for each med. Different people respond differently. Some have side effects, others do not.

Best to join an MS group to discuss meds and side effects.

I had zero side effects on tysabri, but had to stop after 12 years because I suddenly became JCV+ with a high titre . I switched to Ocrevus and had zero side effects but stopped because it depletes B cells, negates Covid vaccines & is higher risk for serious infections.

I started Mavenclad in January. The side effect is overwhelming fatigue for around 3 months, but I'm used to that.

Diet was the ONLY treatment available in the 80s & 90s. I followed the forerunner to the Wahls diet for 15 years. It's a healthy diet but didn't help my MS. And Terry Wahls had immune reconstitution drug treatment. That's what improved her MS, not the diet.

Don't obsess about diet. Just eat a healthy, balanced diet.

MS is caused by the Epstein Barr Virus. So MS drugs that help kill viruses in your cells will help.

Your serum ferritin level is very low and your B12, so arrange an iron infusion and B12 supplements/injections. It will help your MS and thyroid issues as well.

[ChrisColumbus]

"Some reasons for a burning feeling in your legs aren’t as obvious and need a doctor’s diagnosis":

healthline.com/health/burni...

I now see that you've edited your post to say that you've recently been diagnosed with MS, one of the possible causes listed in the link I gave above. You should therefore follow Jools' advice.

[Bramble2000]

doesn’t sound like classic RL to me. Have you tried some magnesium?

[Contra21 in reply to Bramble2000]

I only used the spray going to try a foot bath tonight

[Bramble2000 in reply to Contra21]

I’d look in to taking a supplement but make sure you research the correct type of mag as there are a few different ones.

[Contra21 in reply to Bramble2000]

Why doesn't mine sound like rl?

[Bramble2000 in reply to Contra21]

I can only describe what mine is like. Mine feels like I’ve got a million ants trying to get out of a very small space across the bottom of my spine which makes me have to move constantly. Moving gives a little relief but as soon as I stop moving I have to move again. I feel it in the tops of my arms too and sometimes around my middle. When it’s bad it’ll start at about 8pm and go on to 6/7am non stop. It’s also painful but it’s not like any pain I’ve ever felt before. I wonder if what you are experiencing is something to do with the MS. Take care. X