The weather & RLS

[NancyAshworth]

I think that when the weather is cloudy, windy or raining my RLS gets worse. But what also is bothering me tonight is the burning in my ankles and feet. I have been battling for the last week and a half with Lymphedema, swelling, burning and then have to put up with not just restless legs but restlessness upper part of my body. With all of this going on makes it harder to concentrate and do things in the evening that I like doing. I wish that my husband could talk to someone that has these conditions or at least some of them. He thinks that it is my medications that is causing the flare ups. The doctors don't know what they are doing or I am over medicated or it is some food that is causing it all to happen. In fact he thinks that there is a cure for all this but I keep telling in his dreams I wish there was. That it is not going to get better but get worse and I am finding out that there are more in my family that has RLS and other conditions. I have been to Mayo Clinic in Scottsdale, Az. Lately I have been considering a CBD cream thinking maybe that will help. Lately I can not fall asleep because I feel the restlessness not only in my legs but in my arms. I have been taking several of the Hyland's Restful legs dissolving tabs and also I found a Nerve Tonic made my Hyland's and it seems to calm my nerves down. Not sure if it is the medication or just in my head but I do know that my body doesn't jerk around after awhile. I better get doing another compression treatment on my lower part of my legs. I guess I just needed to vent out to a group that understands what I am going through. Thank you.Nancy

[marsha2306]

I use the Hyland Restful Leg tablets when I can't fall asleep and am starting to feel "twitches." I fall asleep in 2 minutes when I take it!

[chirpyandcheerful in reply to marsha2306]

Hi! Is your RLS severe, moderate etc? My partner's RLS was between severe and moderate for years but now it's milder as a result of years of Iron, Vitamin B and C, and Folic Acid supplements and diet control. How many tablets do you take to reduce the symptoms? Thabks!

[marsha2306 in reply to chirpyandcheerful]

My RLS is probably considered moderate. I take 600 mg gabapentin and it's under control. I've also had an iron infusion. I only take 2 of the Hyland Restful Legs when I can't fall asleep (the gabapentin keeps me awake, not the RLS.)

[Madlegs1]

Hi Nancy- all that experience must be a worry to both of you.

I've never heard of rls being affected by the weather. Food and medicines - yes.

What medications are you takingat present?

Are you keeping a food diary , to see if anything is triggering the attacks.?

What exactly do you feel are your restless legs symptoms. ?

Good luck.

[NancyAshworth in reply to Madlegs1]

I have not kept a food diary yet but am looking into the paleo diet for autoimmune. I have so many other problems besides the RLS. It all started when they found me to have MGUS and I was watched for that then neuropathy and lymphedema flared up and have tried so many medicines. If I listed them it would take awhile but am trying something different with my generic Ropinarole not sure if I spelled it correctly. A friend told me that she was doing the extended release and taking it 3 times a day( 1 in AM, then Noon and then evening) and it has made a lot of difference. So, with mine since I take 8mg everyday I cut them in half and have been taking a half in the morning, noon, supper and bedtime. I have not had to take anything as I have not been having trouble with RLS. Not sure if it is the way I am trying the medicine or because I have a bad case of swelling either from a scrape that I had on my lower leg or the lymphedema and neuropathy caught up with me and I stressed out. I have not experienced any RLS nor sleepy. I have told the doctors that with RLS it feels like I want to jump out of my skin and scream. At night I sleep by myself as I am all over the bed.

Well I need to do some work either at home or work at least a couple of hours and then I need to go to WalMart and pick up a cell phone for my husband. Since I move very slow I better get moving. Talk another time.

[Herve]

Hello Nancy. Sounds like you are experiencing not just RLS but possible unnassociated condition: you mention leg swelling with burning. As far as I understand these symptoms are not typical of RLS. More likely cause is due to something else.

You don't mention the medication you are taking but I am making educated guess your drugs include a dopamine agonist I.e. Ropinirole, Pamipexole or Rotigotine. If you have been taking DA for a while your upper body restlessness may be due to augmentation.

My advice would be that you require appropriate assessment by a consultant neurologist re: RLS and consultant physician in respect to leg swelling and other symptoms.

Pierre Herve.

[Joolsg]

Hi Nancy,

Are you taking gabapentin or Lyrica(pregabalin) as they both cause swelling. Also, as Herve says, upper body restlessness could be Augmentation from Requip/pramipexole/ mirapex.

We would need to know all meds you are taking to help further.

[Neil46]

Hi Nancy, in a round about way the weather does trigger my RLS. Several years ago when thrashing out (PLMS) I broke my big toe joint. This now has arthritis in it. when it is cold and damp my arthritis starts up and immediately I start an RLS "spasm" and hours of pacing the floor. It seems there are many triggers for RLS

[Retren]

Dear Nancy just let your husband read all these posts surely he won,t think we are all suffering from some thing which can be cured? Only alleviated I am sorry to say and even that is somewhat tricky and only achieved after a great deal of hassle.It is very frustrating for you and only adds to the stress of the condition.Are you seeing someone who specialists in RLS as you might find more beneficial medications to help.

[Hidden]

8mgs Ropinerole is way over the dosage to take, The old dosage was only 4mgs , you are taking double the old dosage. Its now recommended to take no higher than 1mg.

[NancyAshworth]

I have been told that but have been on this dose for several years. I am now trying half tablet(2mg) 4 times and this seem to be working for now.