RLS ?

[Chiquita123]

I started with nocturnal leg cramps and twitching of calves about a month ago. This occurs mainly at night and at times when at rest. I do not get the urge to move my legs, but moving definitely helps. At times I am able to see the twitches in my legs. I also get pins and needles in my feet, especially after exercise. My gp prescribed .5 mg flexeril for the cramps and then .5 mg of ropinirole for the twitching, thinking this could be RLS. Taking them ogether I am able to get 5-6 hours of sleep. From my research it appears that cramping and visually seeing twitching are not symptoms of rls. Are you able to see RLS movements? Do any of you experience cramping as a res symptom?

[SueJohnson]

If the .5 mg of ropinirole does not control your RLS you do not have it. This a test for it. Your may have neuropathy. I would ask to see a neurologist.

[Chiquita123 in reply to SueJohnson]

Thank you Sue! I will ask for a referral to see a neurologist. I appreciate your advice!

[Munroist]

Pins and needles in the feet after exercise sounds more like neuropathy/nerve issues. the timing of the sensations at night and evenings could be to do with your sitting position exacerbating nerves or alternatively you are at rest and tend to notice things more. the twitching is again more likely to be nerve related an not RLS run my experience. if you get sensations after exercise then possibly the exercise is impinging on a nerve somewhere although generally moderate exercise and movement are recommended for nerve issues. I have both neuropathy and RLS and I have experienced what you describe but it's not RLS. RLS forces you to move, if you are in a chair you have to move and stand up, in bed you have to get up and for me at least RLS is not associated with pain, just an urge to move. On balance I woudl say it's not RLS but the ropinirole seemed to help according to your posts so that's a little confusing. Maybe its the flexeril and not the ropinirole working.

[Chiquita123 in reply to Munroist]

Agree with you! I have had low back issues for years. The ropinirole definitely takes the edge off and supports better sleep, but it is not taking the twitches away.

[DicCarlson]

Geeze - get off that Rop - you don't have RLS - YET! My severe RLS was preceded by nightly leg cramps - mostly solved with sea salt and cream of tartar (potassium). But then the RLS kicked in - unbelievable and uncontrollable urge to move my legs (that's the key symptom). Nothing helped except getting up and walking about. I of course had never heard of RLS, and docs were no help (muscle relaxants). I eventually had to tell them what I had (after months of internet searching). They of course waved Ropinerol at me repeatedly and thanks to this forum I refused. Eventually iron supplements "cured" the severe RLS. Do check your iron status with actual numbers not just "its OK".

BTW - leg cramps are not a symptom of RLS, but perhaps are a reaction to gut issues preventing absorption of minerals including magnesium, potassium and iron.

[Chiquita123 in reply to DicCarlson]

Thank you! I do not have an uncontrollable urge to move my legs, but moving them gives me some relief. I just sent a detailed email to my gp. I’m sure she will agree a referral to neurology is in order. I also plan on sending her the latest Mayo Clinic guidance after. I hear back from her. Thank you for everyone in this group willing to help those struggling with rls. It makes such a difference!

[RLSBOGEY]

To Chiquita123,Do not take the ropinirole. First thing to do is drink more water and add some electrolytes. Dehydration is common cause of leg cramps and twitching.

[b1interest]

You might also want to get your B12 levels checked. I had some similar weird twitching and other leg symptoms, and I wasn't absorbing b12. However, be careful: my levels looked fine, as did methylmalonic acid, but it wasn't until gastric parietal cell antibodies were discovered--with a blood test-- that it made sense that I wasn't absorbing b12 (antibodies were blocking it). Some people have absorption issues related to Intrinsic Factor, too, so that should be tested.

All the best in getting to the bottom of the issue!

[Chiquita123 in reply to b1interest]

Thanks for the advice. I started taking b12, but never thought about it not being absorbed. I’m told all my bloodwork is fine. I appreciate your insight!

[b1interest in reply to Chiquita123]

Sure. I hope you're able to get to the bottom of your symptoms.