What is your pain like?

[Jaffalove]

Hi I am curious to know what the pain is like, for those who suffer with severe RLS. I' trying to get an idea of how it is different from my pain, as it's severe body cramps that I get, and I'm going to dispute the doctor's diagnosis of RLS, but want to be armed with as much info I can get. My wife has RLS but it's mild as she has no pain just the urge to move her feet and click her ankles and she says it feels like her bones are hot. She finds cold helps her. And does anyone get it anywhere else other than the legs? Thanks.

[Parminter]

Severe body cramps does not sound right to me. RLS almost always starts in the legs, first as a mild distress, worsening over time to become an unbearable feeling. Some feel pain in the usual sense, others feel an absolutely awful distress that is hard to describe. It was called 'torture' by the doctor who first described it. He's right.

Is your pain relieved by movement? Do you have to get up and stretch and walk? If not, then I think your doctor is wrong. It is not possible to bear RLS if you do not move.

By the time a patient feels great pain, you should be jumping up all night (and maybe day) to get relief.

RLS progresses to the arms, maybe over decades, and for some it proceeds to the back, trunk, even the genitals. This is a general rule, as this disease is a little different for everyone.

One way to find out for sure is to take a dose of a dopamine agonist. DAs are a medication for the condition, and also a diagnostic tool. If you do not respond, then that ain't it.

[Jaffalove in reply to Parminter]

Hi Parminter, thank you for your reply that is really helpful, as I said I don't think I have RLS. The musculoskeletal specialist I'm under has put me on a course of vitamin D and iron, on top of the cocktail of medication I'm on. He said if this has no affect then he is going to start me on a Rotigotine patch (dopamine agonist). Can I ask what is the diagnostic tool you mention?

[Madlegs1 in reply to Jaffalove]

It's quite possible that the cocktail of drugs is the source of your troubles.

[Jaffalove in reply to Madlegs1]

Hi madlegs, no I wish it was that easy, I'm on the meds because of the cramps, to try and get them under control.

[LotteM in reply to Jaffalove]

But then, obviously your cocktail of meds is not successful and you need to review them critically with your specialist. It is easy to over-medicate.

Have you been checked for your electrolyte balance and for magnesium? If unbalanced resp. low, they both may contribute to cramps (knowledge obtained through this forum).

[Madlegs1 in reply to Jaffalove]

The real question is what are the individual drugs in the cocktail? Any one of which could be setting off your symptoms.

It doesn't matter a lot what they are prescribed for-- for instance, Amitriptyline is prescribed for depression, but can make rls into a suicidal nightmare.

Just Google" med and rls" to find out. You may get a big surprise.

[Parminter in reply to Jaffalove]

Any dopamine agonist would do it - I would ask for a shorter-acting version, perhaps pramipexole in tablet form, a 0.125mg. Ask for just one or two tablets - if it works, you know, if it does not you have not wasted anyone's money.

I always get totally ticked when you need a trial of a drug and have to cough up for one month's worth!

And, if you should by any chance have RLS, stay far away from dopamine agonists, they store up major trouble down the road. Nasty stuff long-term.

Do yourself, and your wife, a favour by googling 'side effects of dopamine agonists' and take it seriously. They should not call them side-effects. Central Effects would be more accurate.

[NGCT]

Hi! I get it only in my abdomen. It makes me feel like I need to pee but when I get to the toilet I don’t need to pee. I went to every kind of urinary specialist before I stumbled on an article on this site. I showed it to my primary care doctor and he prescribed Lyrica. It has worked!!! Good wishes to you!!!