New to this but think I may have rls, can anyone help?

[Jonan71]

I have had trouble with my legs for about two years with different symptoms. The latest started after sitting on a chair for a training day and got a number bum. I got pain in my coxic and it hurt to sit for periods. That has changed t o numb leg when sitting and now painful bones and legs. The worse symptoms are aching and pain when sitting or lying especially at night

[Bajatom]

Sounds like you bruissed your coccix and possibly a nerve. I've done that and it took months to get better. Does not sound like restless leg. Google RLS symptoms for that. Icing might help.

[BR-OZ]

Jonan that doesn't sound like RSL. You could have a broken coccyx

[Jonan71 in reply to BR-OZ]

i understand the first symptoms do but they have gone and now i am left with symptoms that l have read about on here? legs aching and pain, can't stay in one place and don't sleep?

[BR-OZ in reply to Jonan71]

When we say pain is more of a lack of a proper word. It doesn't actually hurt. It's like getting tickled and not being able to stop it. .. But you don't laugh. .. Basically not a painful feeling but a very irritating feeling. Just to clarify everything. Is that what you feel?

[Jonan71 in reply to BR-OZ]

no l don't feel tingling, l feel pain like sciatica and aching like a dead leg that needs to be almost woken up, pain while sitting, lying and get up from sitting

[Spudellen in reply to BR-OZ]

Now those last symptoms sound more like RLS.

[Heideh in reply to BR-OZ]

I have had RLS for 30 years. It feels nothing like a tickle. I am on Gabepentin and 30mg of OxyContin each night and the pain is horrible. You must have a mild symptom - in the future don’t speak for anyone but yourself when it comes to RLS

[Coastwalker]

My Tailbone Pain (Coxic pain) went overnight, (along with sciatica leg pains, self diagnosed RLS at night, hurting hips and lower back pain)

I was diagnosed with non curable Tailbone pain and given only a rub in gel to help live with the pain, I had to shift from cheek to cheek to stop the hurting and could not sit for long. I also had stiffness getting up out of chairs and bed.

I was diagnosed vitamin D Deficient, I decided off my own back to up my prescribed 1000iu of vitamin D3 up to 5000iu and all my above mentioned pains went almost overnight, but come back within that same day if I forget to take my D3.

I only found out because I experimented after members on another Health Unlocked site on here told me that 1000iu my Doctor gave me was a mere maintenance dose and take a look at vitamindcouncil for up to date safe doses of D3.

Amazing how many illnesses are affected by low or deficient D, 85% + of us are either low or vitamin D deficient and do not know it here in UK,

(I was one of them)

[Jonan71 in reply to Coastwalker]

Hi thankyou for your reply, this does sound like me, went l sit down l have to shift from cheek to cheek too and l have sciatica pain down my right leg and foot which can get very painful, better was walking or standing, at night l just keep turning over to try and get rid of the pain. lt feel as if my leg is dead and aches with pain when l get out of the car or from the toilet (sad i know). l went to the docs the other day and he sent me for a blood test mumbling about B12 maybe?

[Coastwalker in reply to Jonan71]

jonan71,

My Doctor said that there was two types of coxic pain and confirmed I had tailbone pain because I shifted from cheek to cheek to relieve it, there was also another medical name for it too which I think was Coccydynia.

I was not given the vitamin D3 for my tailbone pain, but because my vitamin D bloods were found to be Deficient, I had previously been told by a skin specialist to stay out of the sun. So by not having any sunshine, I was not getting any D3.

I was also in the 'grey' area of vitamin B12 bloods too, (but still within the blood range, so no treatment given, I now supplement.)

Japanese people keep their B12 bloods above 500 to keep away Altzheimers and Dementias, being low or deficient in vitamin B12 can also cause neurological problems.

[Jonan71 in reply to Coastwalker]

i also have had a foot that swells up only goes down a bit if i rest it, do you think that is linked?

[Coastwalker in reply to Jonan71]

Sorry I do not know the answer to that one jonan71.

Guessing only that if your immune system is down, other medical problems can also occur.

Also check ALL your medications, as every medication has side effects.

* Vitamin D3 is an anti inflammatory as long as it is a good safe dose. (not talking about a low dose of high street multivitamins.)

[Jonan71 in reply to Coastwalker]

You have been very helpful I have looked at info about the cocix and back problems and it seems more like my symptoms so will pursue with the doc and see a specialist. Will see what bloods come back too. Thank you

[Coastwalker in reply to Jonan71]

Your Doctor or even specialist might not know any cures for tailbone pain jonan71. I was told I would just have to live with it. Do let me know if any different.

[Coastwalker in reply to Coastwalker]

jonan71, Idea only:-

ask for a printout of any bloods done and their ranges too. I and many on Thyroid Uk do this each time we have any bloods done. You have a right to your own blood results. Doctors don't always acknowledge 'low' in range bloods.

[cumoneileen]

Don't think its RLS sounds as if you have damaged coyx. RLS legs jump involuntary.

You have no control.

[Jonan71 in reply to cumoneileen]

no i don't jump only while going off to sleep, the having to keep moving and being better when i do sounded like it sorry, good to get other opinions as the docs are not good

[Hidden in reply to Jonan71]

You have to have that urge to move your leg/legs when you have RLS, Its a voluntary movement not involuntary movement. You need to look at the RLS criteria to see if you do have RLS, but it sounds doubtful. Here is the link for criteria for RLS. irlssg.org/diagnostic-crite...

[Heideh in reply to cumoneileen]

Legs jumping is an (in addition to) RLS. Many people who have RLS additionally have the leg twitching symptoms but it is a different thing. I have had RLS for 30 years and I move my legs like crazy when the pain is bad to alleviate the pain. My legs never twitch or jump about. I have no pain when up and walking but after sitting or lying for 45 minutes or more the pain eventually becomes excruciating. I have a very severe case of it and am on gabapentin and OxyContin. There is a lot of misinformation out on the internet because a lot of it is old information.

[Heideh in reply to cumoneileen]

That is a different condition that can be in addition to RLS. RLS does not include involuntary leg twitching or movement.

[Windwalker]

There are many things that accompany RLS, however it sounds to me, and I am no expert, that the nerve that comes out of your spine is pinched for lack of room to get out of the spinal opening without some bone or disc material being compressed to the point that communication between your legs and feet and your brain has been interupted. If it were me I'd see an Orthopedic Doctor very soon. With an MRI they can see what I am talking about, if they know how to read one.

[Jonan71 in reply to Windwalker]

would that not get better sitting or laying? it's actually worse then! i dont know why i haven't been sent for an MRI or even any suggestion about my nerves, when the bloods come back i will say i want one to rule things out

[BR-OZ in reply to Jonan71]

Jonan,I really think you need to go to a doctor and get an X ray done. This community only really knows about RLS and I guarantee that what you have isn't it. If you don't believe in one doctor then go to a few, but a doctor's opinion is still far more reliable than of a bunch of people(no offense to anyone here) that are not doctors. Find a specialist. Get referred to one.

[Jonan71 in reply to BR-OZ]

Thank you I have read up on something someone suggested ( tailbone/cocix) this seems more the case and will go back till its sorted sorry to everyone

[BR-OZ in reply to Jonan71]

Oh please no reason to apologise! !! It's just that since you don't have RLS the best thing is to see a doctor as this community exists because even doctors fail in helping people with RLS. And the symptoms are very often regarded as something that we complain to much about but isn't a big deal. I just think you need real medical attention and what you have sounds serious so please don't gamble with your health here.

[Heideh]

Have you gotten this resolved? It sounds like something my husband has.

[Kaarina Administrator in reply to Heideh]

Hi Heideh,

Welcome to our community. I see you are new here. It would be best to start a new posting and let us know your husbands symptoms. This thread is 5 years old.