Restless legs pain!!!

[Alyson66]

Hi everyone, I just have a question, I hear and read people discrimination rls as painful which confuses me I have genetic rls and this is made worse as I have fibromyalgia, my experience of rls is not that it's painful but a horrible sensation in your legs or sometimes full body,I wouldn't say it's painful but people discribe it as such, is it a different thing?

[Alyson66]

Sorry it's supposed to say discribe, bloody autocorrect....

[Hidden]

Painful RLS is real and RLS is RLS whether you experience pain with it or not. Its is now accepted that some people have pain with their RLS.

[Alyson66 in reply to Hidden]

Er OK... I was just curious as to other people's experiences, I wasn't disputing their rls...

[Madlegs1 in reply to Alyson66]

You are singing my song , Alyson. I experience no pain whatsoever from my rls and find it difficult to understand those who do.

I often query whether they actually have rls- but the real defining test/ question is whether one has the uncontrollable urge to move to attain relief. Another good test is that if Paracetamol or Ibuprofen give relief - then it is unlikely to be rls.

Peripheral neuropathy can also be confused with rls "pain". As can other conditions.

I hope this clarifies the issue for you a little bit.

And never stop asking questions.

One clear outcome of this site is that everyones rls seems to be different and require different strategies.

Good luck with your own journey through this tiresome affliction.

Cheers.

[Hidden in reply to Alyson66]

I do experience pain with my RLS. I used to just have the creepy crawling sensations that most people describe for their RLS. Mine changed to pain. I get a bit miffed as some people dont think pain can be part of the RLS, and it must be something else that you have. I have no other condition, only RLS. The pain i experience is a deep ache in my calf, depending on which leg i have the RLS going on. I get the urge to move like everyone does if you have RLS, i have spent many a night pacing to get relief. I have Primary RLS, inherited from my father, also a brother who has RLS.

[HilsK in reply to Hidden]

My HR rises above 110 and my BP rises above 220 /120 when I am in severe pain from RLS (experienced during augmentation) and then it gradually drops to its normal 135/75 as soon as I given medication to relieve RLS. But everyone's experience is so different.

[Neil46]

Hi Alyson66, Many people with FM also have RLS. I recently joined the Fibromyalgia community to gain knowledge of the condition and the group all talk of FM pain, rarely RLS pain - how could they distinguish?

There are many posts here from RLS sufferers with pains that make them take strong painkillers, opiates etc.

For myself, my pain is a strong feeling of electrical charge ready to cascade down my body. I call it a pain because it is very uncomfortable and takes control of my thoughts just as when I hit my thumb with a hammer.

There is a pain score for RLS, I can't find details atm but I'll look it up and see where I would score.

Are you taking meds for FM plus RLS or different treatments for each?

Neil

[Alyson66 in reply to Neil46]

Hi Neil, yeah am aware of all the other symptoms of fybro, have researched both conditions thoroughly over the year's as I've had rls since I was I child and it's genetic in my family, all I was saying is I have never considered it painful, like madlegs said above, it's generally characterised by the uncontrollable urge to move the afflicted limbs due to the horrible sensation in them, it's not characterised by pain. In answer to your question, I've had rls for 40 odd years and fybro for 15yrs and have tried pretty much everything going, I won't bore you with the list, recently the pain clinic has referred me for a lidocaine infusion for the fybro pain, hopefully I will get some results from that, gentle hug coming your way,

[Hidden in reply to Alyson66]

One person's pain may be like another person'a horrible creepy sensation as no one knows what anyone else is experiencing or what their brain tells them it is.

Mine is not like any other pain I have experienced but the level of discomfort and horribleness is such that it might as well be a pain. I describe it to folk as not a pain but very uncomfortable and unpleasant indeed. I strongly suspect it comes down a pain pathway. Incidentally I think Paracetamol does help to a minor degree

[Dasymoo in reply to Alyson66]

I have RLS the sensations make me punch my arms and legs leaving bruises. I could quite easily cut my limbs off as it takes over my life tramadol and pregablin mask it but not that well.

[Neil46]

Hi Alyson66, I'm sorry to hear you have had both these conditions over the years and I hope your new treatment gives you relief.

My soapbox subject is LDN, Low Dose Naltrexone, for autoimmune conditions. some of the FM group get pain relief from it, and few side effects. Just a thought...

Good Luck with the lidocaine

Neil

[Alyson66]

Hi Neil, can you please expand on your soap box subject, am always looking for and open to new suggestions, Alyson

[Neil46 in reply to Alyson66]

Hi Alyson. LDN stands for Low Dose Naltrexone. It is given in small doses (1.5, 3.0, 4.5mg maximum usually. It is a great autoimmune disease fighter.

Developed originally for heroin addiction in large doses, it was found by Dr Bernard Bihari to be beneficial for cancer patients and MS, FM and other conditions in low doses. It is a pain reliever and "system cleaner" best used with another med.

A patient terminally ill with lung cancer became disease free after months of LDN. (Lots of doctors' interviews on vimeo.com)

Have a look at "The LDN Story" and "The Game Changer" on vimeo.

It is not FDA or NHS approved because of lack of funding for trials. Being very cheap to buy it is not financially viable for the big pharma companies, so we have to buy it from compounding pharmacies, there are ways to get a prescription.

Hope this helps, I have "The LDN Book" so if you have specific questions I may be able to look it up.

Neil

[martino]

When thinking about pain and RLS the RLS UK literature makes clear reference to the presence of pain in some RLS sufferers. It’s great that some people don’t have pain. I do but also have peripheral neuropathy so where is the pain from?

[Hidden in reply to martino]

What one person calls pain may not be what another calls pain. I have peripheral neuropathy too as well as RLS. For neither would I describe the sensation as pain but they are both very uncomfortable & codeine helps them both

[Joolsg]

Some people have pain but others have no pain, just the horrible torturous creepy crawling pulling sensation that stops you sleeping.

[Alyson66]

Text deleted as it was considered to be unhelpful.

Kaarina - volunteer

[taylord1984]

Sometimes it feels like my legs are being drilled and other times no pain at all.

[niabxxx]

I think it may be just a matter of intensity. I've suffered with restless legs for 45 years. And most of the time for me it's been very painful. At other times I'm not sure I would call it pain but discomfort might might be a better term. There are times when I have so-called light days when it may not be as bad as the extremely painful days. And yes I do have RLS.